Evelyn spent the weekend in hospital with another virus. She’s getting better now, thankfully, but it threw a large spanner in the middle of my Oh God We’ve Only Got A Few Days Until Our Shop Opens panic. There’s nothing like a toddler with breathing difficulties to make you throw all your to-do lists out the window.

She’s recovering now, thankfully. Hopefully she can avoid more viruses and more hospital stays for a while.

The business launches on Friday and we are, of course, chaotically busy. There’s soap to photograph, packaging to do, labels to print and cut and an entire shop website to fill with products. It’s a lot of fun.

I’ve got a lot of soap to pack.

In the middle of all this, Amy turned EIGHT.

I’m not quite sure where all the years have gone, but there you go. She’s eight and amazing. If I was a proper sort of mummyblogger, I would have written an entire post dedicated to my first born, complete with pictures. Instead I’m just kind of lazy about it. And busy.

So my Money Circle article this week is about Health Insurance and why we don’t have it. I wanted to expand a bit on this for you here. Which may end up less “expanded” and more “whingey” but what’s the use of a blog if you can’t complain about disability now and then?

Last week, Amy had an appointment with an Occupational Therapist at St Giles – the public health system’s answer to quirky and disabled children needing therapy. They’re awesome in there and we’re big fans.

Eve’s physiotherapist had referred Amy through after listening to us talk about some of the problems Amy was having at school. I wasn’t sure what to expect to be honest, certainly not answers immediately. After all, who gets answers straight away? That sounds like a normal person thing to happen.

Amy is struggling with writing at school because her hand isn’t strong enough to hold a pencil for more than a few minutes at a time. Her hand fatigues quickly, collapses a bit, and then fatigue travels through the rest of her body until she is barely managing to complete any handwritten work at all.

She’s smart, but memory only works so far when you’re too tired to complete your worksheets and journal writing.

Recommendations have been made for the school to follow through on. Things like a slope desk, weighted pencils and a Department of Education supplied notebook computer. Amy will learn better if she’s typing out her answers and her news writing, rather than spending that time hurting herself trying to write with a pencil.

These things are yet to be implemented, but I’m not sure it would be happening if we had private health insurance. Leaving aside the nightmare that is pre-existing conditions, most health insurers only offer a small amount of OT support a year. On the fund which seemed most likely to be affordable if I find and keep some regular freelance gigs, I was able to access $300 OT a year for two people, capped at $600. Now I might be misreading how therapy is covered, but it seemed to me like a lot of therapies we access aren’t considered very necessary to health insurers.

Sure, if we break a leg, it would be awesome. But for long term degenerative disabilities, which need supportive care, plus extra medical care? It’s not feasible.

Amy is going to start OT at the end of the month, going once a week for a month when we’ll reassess how much help she needs.

Evelyn sees a physiotherapist, a dietician, a paediatrician, a GP, a neurologist, an ophthalmologist and an audiologist. Some of these things are covered and some are not.

Disability is a hard thing. Not only does it impact every part of your life, but often it impacts your ability to earn money. Once your earning ability diminishes, your quality of life does too, because where is the money coming from? Basics are covered, but other things, things that make life easier like stair lifts and hand rails and dietary needs, those are the things you have to decide whether you really need them.

Evelyn is developing a range of allergies and intolerances and we’re basically on a Paleo diet right now, except without nightshades or strawberries, and with rice.

Gluten makes her sick (we’re going to be checking if it’s just wheat, or gluten as a whole, as soon as we can), dairy makes her vomit. Nightshades give her hives, so do strawberries. We’re down to only fresh produce, and expensive ingredients.

I’m not sure about you, but fresh food is awesome. It’s also expensive, doesn’t last as long as pantry staples and takes more preparation than a bowl of two minute noodles. When I have to plan every single meal to make sure Eve is getting enough nutrients from her food, rather than just handing her crackers and cheese at snack time, I start to get exhausted and broke.

There’s only so much apple sauce a toddler will eat before she’s bored and screaming.

Because apples are cheap and artisan coconut flour and almond meal to make toddler friendly paleo blueberry muffins are not.

Disability is a multi-faceted thing. I think people like to imagine disability in terms of wheelchairs. Without a wheelchair, you’re just putting it on. No matter that wheelchairs are probably in our future. When you think of disability and working, no one takes into account things like pain, exhaustion, joint fatigue, muscle spasms, dislocations, blood pressure issues, heart palpitations, fainting, vomiting, nausea, etc etc. You get the idea.

My form of disability means I cannot work in a regular job, even if I was in a wheelchair, because I need to spend so much time in a prone position between bouts of doing things like preparing a paleo lunch no one will eat.

Without a regular job, there isn’t regular income and no way to pay for the health insurance that people assume I should have, because as a disabled woman who gave birth to disabled children, I ought to be ashamed of using the public system, can’t I see what a drain, a strain we are on the system?

Like I said, complex.

We’re lucky, we have options open to us. We’re in the process of opening a soap making business. Our future, financially, looks brighter than it had been.

Amy has been sick on and off for months. She perks up for a bit, then gets unwell again, and around we go. We’ve been backwards and forwards to the doctor lots, but until she has a period of wellness, we can’t do bloods to test for anything else.

Rock | Hard Place.

So we kind of just thought it was the usual stuff playing up when she was unwell last week with suspected tonsillitis. But then antibiotics didn’t help and she was getting worse, so back to the doctor we went.

Glandular fever.

We think Evelyn has it as well – same symptoms, similar miserableness, same amount of crying while laying in my lap.

Isaac however, remains a bastion of health. Small mercies.

I’m grateful for the small things while the girls are sick. The weather has warmed up enough to make the fire uneccesary. We have plenty of books to read. I can spend long lazy days on the couch cuddling children without feeling at all guilty.

It’s the little things.

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I was making soap earlier using a new fragrance. Usually fragrances come with some extra information about how they behave in cold process soap. Do they speed up the process? Make things super hot? Cause problems? Cause discolouration?

My new fragrance however, had nothing. So I was probably being ambitious when I decided I really really wanted to do a three colour swirl in a column mould.

Sure enough, everything was going beautifully until I added the fragrance.

Things thickened up, fast. Luckily I was mostly organised and got everything swirled and in the mould.

Congratulating myself, I began to clean up, leaving the mould on the sink.

You can see where this is going, can’t you?

Over-confident, I bumped the pipe and it flung itself towards the windowsill.

I didn’t spill much soap batter, so that’s a bonus. But I did put a hole in the cling wrap and duct tape at the bottom which was holding all the soap batter inside the stupid mould.

I shouted for Nathan, who wasn’t nearly fast enough at coming to rescue me as I pressed the hole closed, thanking everything I still had my gloves on.

We got the hole sorted, but I think I wobbled and bumped the mould enough to probably muck up any prettiness. Probably going to end up with a mud brown soap. Boo, hiss.

I had to walk up the road (200m) this morning to discuss an incident in which a neighbour’s dog killed a bunch of my baby chickens. By the time I got back, I was exhausted. It’s not a strenuous walk – the road is flat and easy. But my foot fell apart as I limped home, unable to quite work out which bone was out of place.

Yesterday I had one ulcer hiding in the bottom of my cheek. This morning, both sides of my mouth are ulcerated. My skin is breaking out, my brain is foggy and I am Tired and Run Down.

The school holidays were wonderful, but I’m wrung out. I need a week of laying on the couch reading books, drinking chicken soup and doing nothing.

My joints are flared, my shoulders keep falling out of place and I am feeling like my blood pressure can’t work out how low it wants to fall.

Look, this happens every few months. It’s actually been a while since I felt this terrible, and it’s nice to have had a break in the middle from the see saw that is my health.

But today I feel crappy, and exhausted. I have things I need to do, I have things I want to do. I have children to feed and watch and play with, but uuuuugh.

Sleep.

School is back, which is a bonus. Isaac began Kindergarten last week, and his first day went amazingly well.

I’d be lying if I said I wasn’t looking forward to this week, with 2/3 of my children at school, and Evelyn still napping regularly.

Hopefully, I can rest, recharge, and stop feeling like I’m being pressed into the ground by the sheer weight of the exhaustion I have.